Marlee’s Story
Marlee (Age: 18-24)
I feel the most free, connected to others, in tune with my body, and connected to the earth when I sing. … Singing, especially communal singing, is perhaps the most sacred thing we can do as humans.
SINGING PRACTICE
Marlee is a professional singer who studied music education at an undergraduate level. She is currently student teaching with a high school choir and teaches private voice lessons on the side.
MARLEE’S STORY
I always felt ~different~ growing up, but I was the classic case of “your labs are normal, growing pains are normal, frequent injuries and broken bones are normal, and you’ll grow out of it!” Every doctor that my parents took me to growing up assured them everything was fine, and I didn’t have a reason to not believe them. I thought that everyone had to pop their joints back in the morning, couldn’t stand in line without feeling lightheaded, had debilitating period cramps that turned them into a zombie every month, and broke a bunch of bones as a preteen and teenager. However, when I got to college, I knew something was wrong. I couldn’t walk up the stairs of the music school without becoming winded. My periods were taking me out two weeks out of the month instead of just one. My joints were cracking more and more everyday. I started getting regular migraines almost everyday. … And then I got mono my sophomore year! Everything got exponentially worse after I had mono. It was like my body decided to quit on me.
Marlee learned about conditions like hEDS, POTS, and dysautonomia from influencers sharing their stories on TikTok. After viewing more of these posts, she realized that she checked almost every box for common symptoms. She began to pursue diagnoses, starting with her primary care provider who referred her to a variety of specialists including an OB/GYN, geneticist, rheumatologist, cardiologist, neurologist, and psychiatrist, among others.
The specialists only examined one part of my symptoms instead of examining my case holistically, which led me down several wild goose chases that were no closer to a diagnosis. Again, I was “fine because I’m young and my labs were normal, and I just needed to exercise, eat right, and sleep better!”
By age 21, nine months into her diagnostic journey, Marlee had been diagnosed with hEDS, Attention Deficit Hyperactivity Disorder (ADHD) Combined, anxiety disorder unspecified, dysautonomia unspecified, endometriosis, fibromyalgia, and Irritable Bowel Syndrome (IBS). She now receives a variety of treatments including medication, physical therapy, and massages. Her care team is still working to find the right balance of medication and other treatment that works best for her unique set of symptoms.
She is still seeking a diagnosis of POTS.
Has your singing practice or pursuit of singing shifted in any way since your diagnosis/onset of symptoms?
I used to be in 3-4 choirs a semester, and I had to scale this back to 1. I work a church job as a staff singer, and I’ve had to negotiate my contract to only appear about 2 weeks a month instead of every Sunday. I didn’t give an optional senior recital, because my body couldn’t handle it. During my time in voice lessons, I regularly had to cancel lessons. I often had to edit down repertoire selections for each semester, because I didn’t have the bandwidth to practice that many pieces.
I felt like I was starting over my junior year in college, because my body had changed so rapidly over the first two years of my voice study. … I couldn’t get through a voice lesson without feeling lightheaded, and my breath support was so much worse than it used to be.
Finding a healthy singing posture continues to be a challenge for me. … My balance is also impacted by hEDS, because I never feel steady on my feet. … I struggle to plant and sing for performance. I often have to be moving, and shifting weight across my legs. I also struggle to keep my knees bent, because my knees naturally hyperextend.
ACCOMMODATIONS THAT HELP MARLEE WHILE SINGING
Mobility aids when symptoms are flaring, sitting during choir rehearsals and performances, using a music stand instead of holding music
MARLEE’S ADVICE
For singers:
Be patient with yourself! You’re waking up to a new body everyday. Some days, you’ll feel almost like your “normal” self, and some days, you want to be in bed all day. This is okay. Our voice is part of our body, so whatever we are feeling elsewhere in the body will affect the voice. If you are feeling frustrated with your voice, ask yourself how the rest of your body is feeling, and if your expectations are realistic for the day. Manage how much energy you expend in other areas of your life on heavy singing days. Reserve your energy for what makes you happy.
For professionals working with singers with these conditions:
Do some research so you understand the wide list of symptoms your student or singer might be experiencing. Provide a chair and a stand!! Ask them whatever accommodations they might need for a rehearsal, and do your best to meet their requests. Check in with them frequently to see how they’re feeling. Encourage them!! Remind them of their accomplishments, especially on the hard flare up days.
